The Mission of Autism and Scouting is to develop programs, projects, support and resources for all scouts on the Autism spectrum, their families, caregivers and scout leaders that promote acceptance, inclusion, support skills for life and support self-advocacy within a scouting program. We support all scouting programs in the US and around the world.

Sunday, January 22, 2012

Special Needs Unit or Not?

Thank you so much for coming back to part of a series of blogs that I am doing on Separation vs. Inclusion and Integration within scouting.

In part one (Separation vs. Inclusion vs. Integration in Scouting), I looked at laying the foundation to frame the conversation. I gave my background and came up with three questions that will be addressed in this series of blogs and it ended with three premises. As a very quick review:

Please go back and read the first Blog to get the full context.

Questions:

How does Separation breed Inclusion with a final outcome of Integration within a scouting program? Who should be in a special needs unit and who should be in typical unit?How does my unit become more understanding and support the scouts that do have special needs? or How can our unit help other units?

Premises:

The first premise is that all units are in some way separated. The second premise is that the ultimate goal is to provide access to a full inclusion scouting program.The third premiseis that we choose scouting to help our children build lifelong skills to help prepare them for the future.

Separation vs. Inclusion vs. Integration

Laying the Foundation - Part 1 Should my scout be in a separate unit?Separation does not mean exclusion -Separation can lead to integration -How typical units can help bridge the gap -How can typical units can be more inclusive -

Should my scout be in a separate unit?

I started writing my blog about “Separation does not mean exclusion” but I realized that I missed a very important topic that really should be addressed before we can get to this question about how separate does not mean exclusion. That question is if my scout should be in a typical unit or a unit that can provide extra care as a special needs unit might be able to?

Many scouting organizations around the world have units comprised of scouts with similar disabilities and abilities. For example, some are comprised of all scouts where all of the members have a visual impairment, they might be all or mostly deaf, they might have physical challenges, mental challenges or all of the scouts might be on the Autism Spectrum. Some units might have a combination of disabilities or are Scouts for Life units (adults still past youth age allowed to continue in the scouting program because of their disability).

Even before you can make a choice between a “typical” unit and special needs unit you have to see if there is a unit that is special needs close to you. For the Boy Scouts of America (which includes Cub Scouts in the US) there are currently only 257 special needs units which serve about 5,250 youth (numbers provided by BSA national office). For the Girl Scouts of America, according to the national office in New York, they do not have a special identification for special needs groups and the policy is not to have special needs units but have all scouts be integrated into a troop. Despite this policy, some Girl Scout units have publicly identified themselves as special needs. Many states don’t have any special needs units at all so the only choice is a “typical” unit or start one yourself (which is an extreme amount of work).

Autism and Scouting is currently working on a worldwide project to identify and list all known special needs units as well as list “typical” units that make a commitment to provide training to adult leaders, education for youth within their groups and special considerations when working with scouts on the Autism Spectrum, with Sensory Processing Disorders and related conditions. If your unit would like to know more or know of a company that would like to be a proud sponsor of this program, please e-mail us at autismandscouting@gmail.com or john@autismempowerment.org . We are hoping to launch this new program shortly and will keep you updated.

Things to consider

We have put together a series of questions that we hope you will find helpful in trying to determine if a traditional unit is best for your scout or a special needs unit would be best. If you are lucky enough to have a specialized unit in your area, then you can make that determination which kind of unit is best for your scout. If you don’t have a specialized unit in your area, I will address these questions in part 5 and part 6 in this series of blogs.

How typical units can help bridge the gap - Part 5

How can typical units can be more inclusive - Part 6

I will give my personal story on why a typical unit was the right choice for my oldest and why a special needs unit will be the right choice for my youngest.

1 - What are the sensory issues, educational issues, communication issues and physical issues? The parents and caregivers know the scout the best. Make a realistic list of all of the strengths and weaknesses. You will need to sit down with the leadership of any unit and go over both lists with them. Any unit that you go into will need to know what is going on with your scout. Autism and Scouting has put together a Sensory Form for Scouting units to use in order to work with scouts with Autism and Sensory Processing Disorder but can be used with any special need. We will be more than happy to send you the form upon request for free. You can either leave a note on the facebook page or e-mail us.

AE Sensory Processing pdf

2 - Is your scout is in a traditional school setting and if so, how are they doing in that setting? Scouting can be in some ways like school and in some ways can provide you a glimpse about how your scouts might do socially and academically. If they are in a traditional classroom with or without support and they are adjusted and progressing well without much delay then you should take that into consideration when looking at what type of scouting unit would be best suited for your scout. If they are struggling, having sensory issues, concentration issues or any other issue that is impeding their progress then that should be considered as well. 3 - Does the leadership know and understand the special needs of your scout? This means they are not just giving lip service and saying “yes, I get it and we will take care of them”. Retention has been a challenge for many scouting units in the US and many times units want to get the numbers to see who will stick. It is strongly recommended that you have a meeting with the unit leader and if the unit has some type of committee that the leader is also included in the meeting. For Cub Scouts, Joey and Beavers having the Den Leader in the meeting is important as well. In the meeting let them know about your scout’s strengths and weaknesses. The unit should be aware of any sensory issues and at the meeting, you should bring along a completed Autism and Scouting Sensory Form to let the leaders know what the issue will be. This is a meeting where you should be interviewing the leaders to see if this will be a fit for your scout as well as your family. Scouting doesn’t just include the scout, it can and should be a family experience.Most units will be more than willing to add new kids who have special challenges but sometimes the leadership in a traditional unit is not prepared to work with a scout on the Autism Spectrum or one that has Sensory Processing issues. In some cases leadership will seem reluctant to add scouts with special needs because they have no experience or understanding on what Autism and are either fearful or unwilling to reach outside themselves to expand their knowledge. 4 - Has the leadership worked with scouts either in the present or the past that have similar conditions as your scout? As every scout on the Autism Spectrum is unique, if the leader has worked with somebody with co-conditions and sensory issues near to what your scout has, they will have a better understanding what it takes to work with scouts with Autism, Sensory Processing Disorders or related conditions. This is not to say that you should eliminate a traditional unit just because they have not worked with scouts with Autism in the past. I would say the vast majority of leaders would be willing help as best they can the scouts under their care, especially if you come in with a positive attitude and a willingness to assist and help educate about your son or daughter.5 - What kind of resources does the leadership have available in order to best service your scout? You should look for a unit that can work with you and your scout to give them the best possible accommodations or be willing to work on putting into place accommodations or an action plan to best have the support the scout. Is the unit willing to have a recovery room or a place the scout can go to take a break if needed? Is your unit willing to put in place alternate rank requirements if your scout is unable to complete the ones that are spelled out in their advancement manual? How flexible is the unit leadership in working with the scout. In some cases the unit will not be able to meet the needs or special accommodations that the scout requires. In some cases they will want to, they will just need to have extra training and resources in this area.6 - Does your son or daughter have an IEP (Individual Education Plan or eqivalent) and what is in it to provide them support? Many schools try to take care of their students that have special needs and use an IEP. In the IEP, it should spell out all of the different accommodations that the student needs and that the school will be providing to support the further education of the student. Some of these techniques might be able to transferred into the scouting arena. If you feel comfortable with the leadership, share what is working for your scout in the school setting. There might be a chance that the same techniques might be employed. Please note that if you are seeking different requirements within the Boy Scouts of America (BSA), you will need to provide a medical record as well as any school documentation (including the IEP if the scout has one). Leadership in a Special Needs unit are there because they are dedicated to serving those scouts that might not be as successful in a more traditional unit and it would be strongly recommended that you provide them as much information as possible.

Personal Story

Let me first say that I strongly believe that many scouts with either high functioning Autism or Asperger’s would be best served in a more traditional scouting unit unless the social communication issues are extreme, there are considerable physical limitations, bullying is happening and it is not stopped, leadership is unwilling to work with the scout and their family or the scout has extreme sensory processing issues where resolutions can not be accommodated by the group. Social communication with these scouts is one major issue that can be addressed and worked on within a traditional unit in hopefully within a non-threatening arena.

For my oldest, he was in scouting for two and a half years (between 3rd and 4 grade) when he received his diagnosis of Asperger’s. Up until that point he was kind of like his Mom (who now also has a diagnosis of Asperger’s) and a bit quirky. He made his first real friend in scouts in third grade as a Bear and still hangs out with this boy even though the friend dropped out of scouts two and half years ago. He has been able to practice joining in games, leadership (he currently is a Patrol Leader and was our troop’s first Webmaster prior), he works on adult interaction when working on merit badges and has been placed in situations to work out problems.

In the movie, “Temple Grandin” Temple, an american doctor of animal science, best-selling author and woman with high functioning autism who thinks in pictures used the visualization of doors being placed in her way as obstacles. She was taught that when you go through those doors, the world can open up to you with new possibilities. With my oldest son, a traditional unit has provided a series of doors that he has been able to walk through. Once he passes one door (rank or achievement) there is one more door ahead of him that he can work on.

For my youngest, he will still have similiar doors, but the road to get though those doors will be much harder and will take different strategies and much more direction and concentration. So for him, he will start out this coming spring in a unit that is a Sensory Friendly pack that will also have a designation as special needs (I like to think different needs). My youngest has Autism and is on the higher functioning side but he has a great number of impulse challenges and sensory processing issues. He is very oral in terms of wanting to put things in his mouth, he has the tendency to bolt or wander, he has many sensory issues with food and some textures, impulse issues and volume control issues just to name a few. At this time, a smaller unit that is more specialized in providing very individual support is the best place for him to start out as a Tiger Scout.

After spending about a year in our ESD 112 Birth to 3 program where we had teachers and therapists come weekly to our home, our youngest started preschool at the Early Education Center (ECC), a school within the school district for those with a variety of special needs. The first year he was there, his classroom had only children with special needs. The second year, the classroom had the core group but added in some typically developing children to act as peer mentors. At the start of the current school season he was placed in a traditional Kindergarten classroom with a shared support aide and weekly pull-outs for social group, speech and OT.

Using the model of slow integration that he had in a school setting, one goal that we will have for him as long as he continues to progress is to have him transition into a typical Boy Scout Troop. The doors for him may be harder to open or may take more effort but we think he is up for the challenge and would benefit greatly from the experience.

Final Thoughts

It will all boil down to if you think your scout will thrive more in a different needs (Special Needs Unit) or a more traditional unit. Some scouts may be best served by a traditional unit, however if they are in early elementary school and may already be behind socially, you may find in the beginning that a special needs unit with more one-on-one attention will be a better fit.

For some scouts a traditional unit will just not work because of all of the sensory issues that can not be addressed properly or a variety of other issues. For them, a sensory-friendly type of unit which uses strategies and more one-on-one support allows the scout a better opportunity to have access to a successful scouting experience in more of a “no apologies” type atmosphere. When you’re around other families that “get it” or at least are walking in shoes that came from a similar shoe store, the environment of acceptance is often more conducive to growth. If there is not a unit like this in your area, consider starting one. The chances are you are not alone and all of the hard work in starting a unit will be paid back tenfold when you see the scouts do amazing things and their lives are impacted by a scouting experience.

Whichever way you choose, make sure to always Accept, Enrich, Inspire, Empower!

4 comments:

Great post. You've highlighted the many challenges of walking on either side of the fence.

Personally, I feel that many special needs units would benefit from joining with standard units on regular occasions.

For example; when I was at school, in years 5 and 6, our classes joined about once per month with a local blind school. We played sports with them and we went on excursions with them.

It taught us a whole lot about each other and we made a lot of friends. I feel that this sort of interaction should be extended as it will only improve worldwide understanding and tolerance (in both directions).

I came across an article about the Cub Scout group for autistics that you co-founded in Vancouver. Although my first impression was that this was a feel-good story, my second thought was are these boys being exploited by being in the press? Is seperating them from a normal scouting group teaching them inclusion? It looks like exclusion. Would it not be better to integrate them into a group of other children that are their peers? What happens after they graduate from this group if there is no other Boy Scout group to take them in? Structure and routine all broken. Are all the children in your group aware they are autistic? I just wonder if your group is not setting itself up for bullying and exclusion even though your heart is in the right place.

Thank you so much for your comments. I hope that you will come back and read my next blog which I hope do have posted by Tuesday, Feb. 7th. Separation does not mean exclusion.

Then the fourth one - Separation can lead to integration -

I think these two will take care of your questions but in the meantime.

Many of these scouts would never make it in a mainstreamed Pack or Troop. Or the parents would not even attempt a scouting experience for their child and would never have a chance to reap the rewards that scouting can offer.

I believe the Cubmaster is working with the District Executive to start in a year or two a Troop where many of these boys could go. Some on the higher side of the Spectrum may go into a more traditional Troop where others that need more assistance will transition into a sensory friendly Troop thus giving them a natural progression.

Many of these boys are being bullied and being forced out of scouting, this gives them a chance to enjoy scouting in a safe bully free place. I hope you check out my up coming blogs for more information.

Ok John, I thank you for responding. I think I had a knee-jerk reaction because there are those in my family who are differently abled and we try to keep them as much in the real world as possible and not seperated but upon further reflection, that is not always possible based on skillset and each person is different no matter what abilities they have skills in. It is very emotional for me. I am sure it is personal for you too. Sometimes the kids don't seem to notice and I wonder if God protects them. God bless you and your family.

About Me

The Mission of Autism and Scouting is to develop programs, projects, support and resources for all scouts on the Autism spectrum, their families, caregivers and scout leaders that promote acceptance, inclusion, support skills for life and support self-advocacy within a scouting program. We support all scouting programs in the US and around the world.